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Sat, Jan. 12th, 2008, 05:21 pm
williamleevi: hello all.

 Hey, I'm Will. I just discovered this community.

25, with Essential Thrombocythemia displaying symptoms. Trying to find a way to avoid the nasty medication that the doctors want to put me on. I'm seeing a naturapath too. 

I'm a little nervous since a couple of months ago, I had a TIA. 

Trying to decide if I should just take the medication. (Hydroxyurea)

So that's my bit.

Anyone else here living with myeloproliferative disorders? How're you feeling about your meds? Anyone have any success with alternative medicines/therapies?

Sun, Jan. 13th, 2008 02:59 am (UTC)
bevraye: ET

Hi Will,
I also have ET, diagnosed about 4 years ago. Scared the hell out of me at first because I just knew I was going to die from a stroke. I've taken all of the meds there is to take. Agrelyn, very nasty stuff, tried it twice for several weeks and finally had to quit due to heart palpatations.

The hydroxyurea is the best medication you can take. I was on a 2/3 schedule but my platelets always seem to be about a million so now I have to take 3 a day. The side effects are minimal for me but at first I think that I imagined all kinds of effects. Bottom line, there isn't anything else so I just finally adjusted to the fact that I have the disease and the hydrea is the only option that I have.

There is another site that you can subscribe to that has all kinds of people with myeloproliferative disorders. I've copied the site name and some information for it. If you can get through all the unnecessary stuff you can learn a lot. Good Luck to you and try not to worry too much.

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Sat, Jul. 19th, 2008 12:13 pm (UTC)
(Anonymous): ESSENTIAL THROMBOCYTHEMIA

I SUFFER WITH ET ,I WAS PRESCRIBED BABY ASPIRIN 8 YEARS AGO ,A COUPLE OF MONTHS AGO I WAS PRESCRIBED HYDROXUREA,AFTER LOOKING UP THE AFTER EFFECTS OF THE DRUG I FELT THE CURE WAS WORSE THAN THE DISEASE,SO I DECIDED AGAINST TAKING IT ,AND CONTINUED ON THE ASPIRIN . I HAVE COME TO THE CONCLUSION THAT THEY KNOW NOTHING ABOUT WHAT CAUSES THE DISEASE ,AND EVEN LESS ABOUT WHAT CURES IT AND THEY ARE MERELY EXPERIMENTING,NEED I SAY MORE, THERE IS SOME TALK ABOUT JAC2 GENE MUTATION HOPEFULLY IT WILL PUT THEM ON THE RIGHT ROAD , MAY